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"I found out I had HIV when I was pregnant for the first time, in 2009. In Kyrgyzstan, all women are tested during pregnancy twice, once early on and once later in the pregnancy. They say it is your choice whether to get tested, but if you don't then you cannot get maternity services. The result was a shock but I wanted to have my child.

My medical card has a code on it which shows that I have HIV to anyone who knows the codes... as soon as people in the hospital saw that code, they didn't want to help me

I sat down with my own maternity doctor and with the AIDS Centre and made a plan with them about the delivery and how it would be managed, because there is a lot of stigma associated with HIV in Kyrgyzstan. So, my doctor understood the issues. But when I started to give birth, my doctor was not available. So that meant I had to go to the maternity hospital and be seen by whoever was there. My medical card has a code on it which shows that I have HIV to anyone who knows the codes. There was no question about whether I disclosed my status – it was already there, on my medical card. And as soon as people in the hospital saw that code, they didn't want to help me. They started to find all kinds of reasons for rejecting me, for not being able to help with the delivery, but it was only because they were afraid of my HIV. Even the management of the hospital didn't want to accept me.

When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen

Eventually, I managed to contact the Head of the AIDS Centre and they intervened with the Head of the hospital to let me stay there, because I was about to give birth. But even then and despite their intervention, I was put in an isolation room. When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen. They were obviously very reluctant to touch me or even the baby. They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful. Afterwards I went back to that hospital with people from the AIDS Centre. We did some training with them and I talked about my experience and why it was wrong. It was very successful and it has led to further training sessions in other maternity hospitals, so I hope that some good has come of it. But I know, from later experiences and from other women, that there is still a long way to go to get rid of stigma in our maternity system.

They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful

"

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BHIVA 2019: First data on trans people accessing HIV care in England

23/04/2019

There is a dearth of data on transgender and non-binary people receiving HIV care in the UK, but Public Health England (PHE) is beginning to redress this: 123 trans people were recorded as accessing HIV care in England in 2017.

Peter Kirwan of PHE and Michelle Ross of the specialist service CliniQ co-presented the data at the British HIV Association (BHIVA) conference in Bournemouth earlier this month. Whereas PHE’s forms used to ask about gender in binary terms, they have now adopted a two-stage approach that more accurately records diverse gender identities. The first question is, “How do you identify your gender?” and the second, “Is this the same gender you were assigned at birth?”.

The HIV & AIDS Reporting System (HARS) collects data on each attendance at HIV clinical services. As the new gender questions were only recently introduced, accurate recording of gender identity by clinicians is likely to remain incomplete. Nonetheless, in 2017, a total of 123 individuals were recorded as having a different gender to the one they were assigned at birth (0.14% of all people accessing HIV care).

The vast majority (88%) were trans women, with 8% trans men and 4% identifying in another way. Just over half were living in London, 62% were white and 42% were aged between 35 and 49 years. Figures for the proportions diagnosed late, taking HIV treatment and having an undetectable viral load were the same as for the wider population of people living with HIV. However, the proportion under active psychiatric care (16%) was far higher than for other people living with HIV (4%).

A second data source is Positive Voices, in which a representative sample of 4424 people attending HIV services in England and Wales took part. This was a self-completion survey and a greater proportion of participants identified as trans or non-binary (39 individuals, 0.88%), suggesting that these gender identities were under-reported by clinicians in HARS.

The data from Positive Voices suggests health inequalities – 41% felt depressed or anxious (versus 23% of other participants), 40% said their health was bad or very bad (versus 26%) and 36% reported problems with washing, dressing or other aspects of self-care (versus 13%). In addition, 12% felt they had been refused health care or treatment had been delayed because of their HIV in the past year (versus 7%).

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